Planning For When Your Mind Fades

Studies estimate that more than 6 million Americans are currently living with Alzheimer’s. And as our population ages, Alzheimer’s and other forms of dementia will afflict an increasing number of people. Although irreversible and incurable, those diagnosed with these diseases can live for long periods of time with treatment. 

In the early stages of the disease, individuals with dementia can maintain a good quality of life. However, that changes as the disease progresses. People afflicted with dementia lose their ability to recognize family members, become increasingly fearful and agitated, and are unable to take care of their basic needs.

If you receive a dementia diagnosis, what type of treatment would you want? Would your wishes change as the disease progresses? 

Living Will for Dementia

Dr. Barak Gaster, an internist at the University of Washington School of Medicine, believes that most advance directives are not appropriate for diseases that progress gradually. This is because they do not adequately account for the fact that treatment wishes may change as the disease advances. So he worked with others to create a dementia-specific advance directive that allows those diagnosed with the disease to better express their wishes.

The Health Care Directive for Dementia provides information about the symptoms of mild, moderate, and severe dementia, and allows individuals to specify their treatment goals depending on the course of their disease. 

For example, someone could specify he would like to receive all treatment that prolongs his life, including resuscitation if his heart stops beating, if his dementia is mild. However, that same person could also direct that all care to prolong his life should not continue when his dementia becomes advanced, and he doesn’t recognize his family members and must rely on others to assist with all his personal needs.

Is the Dementia Directive Binding

While the dementia directive is not legally binding, having this information can ensure a patient’s wishes will be respected. It can also alleviate the emotional burden family members may experience when making difficult choices in the absence of clear guidance.

The best time to complete a dementia-specific advance directive is before a dementia diagnosis, since even those with early stages of dementia may lose the ability to engage in complex planning about future medical decisions. 

There is no cost for downloading the document

The New York Times featured Dr. Gaster and one of his patients in an article titled: One Day Your Mind May Fade. At Least You’ll Have a Plan. Many thanks to my friend, Kay Allen, a certified financial planner in Colleyville, Texas, for bringing the article to my attention.

This article was originally published on February 26, 2018, and updated on October 6, 2023.